Living, and Sharing, with Mental Illness

Sharing Can Shape Our Lives

For what we are, we are by sharing…and it is by sharing that we move toward the light.” These words come from my temple’s prayerbook for the Jewish New Year, and they never fail to re-ignite my sense of purpose each year.

bens beads
Before Ben Had a Job, He Took an Art Class and Made These Beads for Me

Some seem to need this sense of community more than others, perhaps, but the fact is: we are all on this earth together. All of us. Healthy, or living with an illness or disability. Young, old, in between. Introverts and extroverts. Men, women. Different backgrounds, families, sexual orientations, strengths, challenges.

And what we are, what we become, the mark we leave on this world someday – it’s a journey made meaningful by the sharing. And for that, we need each other.

How Stigma and Self-Stigma Can Lead to Isolation Instead

I recently participated in a wonderful panel called “Self-Stigma Solutions”, alongside three people who live not only with mental illness but also with the stigma that can come along for the ride – both external and internal. Each person shared how they were either told, or told themselves:

  • “your life is over”
  • “you’ll never amount to anything now”
  • “you’ll never have friends”
  • “you may as well just give up”

Well – these people did not give up. They were down, but came back up. They not only refused to believe the stigma, they learned to change the messages they were giving themselves.  Yes, even with mental illness and all the stigma that comes with it, sharing is possible. One of my fellow panelists is now a lawyer, one a therapist, one a counselor – and all share their stories to help others living with mental illness, and their families. Thank you.

As for Ben, he spent years feeling unemployable – which wasn’t easy. How do you answer when people say, “and what do you do?”, when it’s all you can do to stay out of the hospital? Slowly, though, he began to build upon the sharing he was doing: chores at his group home, a commitment to “Anonymous” meetings, volunteer work, helping us with household chores when visiting. He needed to share, to feel needed. And, eventually, he not only returned to college- he also has been employed part-time for almost 18 months. Ben has a bigger playing field, and a clearer structure, for sharing – and it has added to his recovery in so many ways.

Steps Away from Self-Stigma, and Toward Sharing

Three Steps That Can Help Erase the Negative Messages:
1 – Consider the Source of Negative Messages (they may be ignorant of the facts)
2 – Hang On to the Positives (past success, others who believe in you)
3 – Replacement Messages (e.g. eliminate the word “just” or “only” when you describe what you do)

Yes, this takes patience. Yes, it takes rewording your doubts until they look like problems to be solved instead of obstacles that prevent.  Yes, it takes work, and time. But each of them now share their lives, as does my son Ben.

However we find community – a group home, a clubhouse, volunteer work, a meeting, your family – we

sun appears
Share Your Light

each have something to share. And, by sharing, we let our own lights shine as we move toward the greater light we all create together.

See the person, not the symptoms.
See possibility and promise. It’s there, with treatment, respect, patience, community, and hope.

7 thoughts on “Living, and Sharing, with Mental Illness

  1. This is a beautiful and meaningful post. You have reminded me of the importance of sharing, and I appreciate that. I love what you say about “rewording your doubts until they look like problems to be solved instead of obstacles that prevent.” That is so hard to do sometimes when dealing with a mental illness. Thank you.

  2. Hi Randye,

    My husband and I just completed the 4th class in our local NAMI Family to Family course and we got our first real insight into the biology of the brain and of mental illness. Our 30 year old son had his first psychotic break 7 years ago and was finally diagnosed with schizoaffective disorder 2 years ago. As he has spiraled deeper and deeper into his illness to where he can no longer work or care for himself, I see now that we have been in isolation all these years, trying to normalize what was happening to our son. NAMI has been an eye-opener, a godsend and a ray of hope. Another mom in our group loaned us her copy of “Ben Behind His Voices” last Monday and I have not been able to put it down these past 6 days. I finished it this weekend. My husband is reading it now.

    NAMI is our first foray into sharing with others what has happened to our son, outside of family. The support we’ve gained from the sharing in just four classes has opened our eyes to our isolation and the disservice to our son as we have just been trying to not rock the boat at home to keep him out of crisis. Our son, Bobby, has no insight at all into his illness and has never stayed on his meds more than a few weeks at a time. Your book has given me hope for my child and energized me to educate myself and find resources for him. Indifferent psychiatrists,frightened extended family and my own inertia as we just cope day to day, has clouded my judgement and my resolve. I feel I am coming out of a stupor.

    The respectful, honest way you shared your family’s story touched me deeply, and your fierce love for Ben has strengthened my love for my own son and reignited my desire to be his best advocate. NAMI provides the research and educated support we kept trying to find from doctors but never did. Stories like yours give me hope, resolve and energy. I just wanted to let you know that you, and Ben, touched our lives this week and opened a whole new realm of possibilities for us and Bobby.

    1. Dear Laura Jo –
      Your comment strikes so many chords, as you might imagine. So sorry for what you are going through…and GLAD you found NAMI, and so honored to know that my book has been of some help and comfort for you and, hopefully, your husband. That’s why I wrote it, and hearing from you about its effect means so much. I hope you’ll do what your friend did and share the book with others who may resonate with it. Even the reader reviews on places like Amazon seem to encourage families to break isolation, as you did, and reach out for support. I’m so glad you did – how well I know the loneliness that a diagnosis can bring.
      Hang in there, and I wish your family (and your F2F group) continued support, courage, love and strength – my best, and always in hope,

  3. It seems most of the people in the small (inner-city) church I go to have some daunting mental health challenge. Whenever I tell someone I battle schizophrenia (well, schizo-affective syndrome) they almost invariably pipe up and tell me they have schizophrenia too. I hope to have a group start up to encourage them to not park their lives. One of the ladies said she had been told she had paranoid schizophrenia, but she didn’t know what it was. Where to start–well, that would be a place. And to just talk about it–it seems its one of the last taboos.

    Your book was an encouragement, as in putting courage in. And best wishes to Mr. Ben.

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